'Kind, gentle and generous giant': Shrewsbury parkrun stalwart with motor neurone disease who raised tens of thousands for charity dies aged 58
A popular Shrewsbury runner who had motor neurone disease and raised more than £78,000 for charity has died.
Nick Deane, who was diagnosed with the debilitating condition in 2023, died last Friday (October 31) aged 58.
He was a well-loved face among the running community in the county town, racking up hundreds of parkruns, and also ran with the Shropshire Shufflers.
Nick responded to his diagnosis with bravery and determination, taking inspiration from rugby league legend Rob Burrow to embark on gruelling fundraising challenges to generate huge donations to the Motor Neurone Disease Association (MNDA).
He started off by running 26 miles across December 2023, which raised £11,000, and followed that up by completing the Three Peaks challenge with a big group of friends last year.
His efforts garnered praise from England rugby league legend Kevin Sinfield, Rob Burrow’s friend and former teammate who has also been heavily involving in supporting the MNDA.
Sinfield praised Nick’s efforts as “incredible”, “inspirational” and “nothing short of phenomenal”.
Nick Jones, a good friend of Nick's, described him as a "popular but unassuming" man, who nevertheless "made a big impression", and said a group of his loved ones and friends have promised to get his fundraiser to top his ambitious £100,000 target.
"Since his diagnosis in November 2023, Nick has been on a mission to raise awareness and funds for MND research," he said.
"He inspired over 30 members of his friends and family to tackle the UK Three Peaks challenge in May 2024. Nick himself was one of the quickest up and down each mountain!
"That endeavour resulted in Nick and Lyn meeting [England's World Cup-winning rugby star] Jonny Wilkinson as part of The One Show: One Big Thank You.
"Jonny surprised the couple on top of the O2 [Arena]. That emotional piece was screened in September 2024 and watched by millions.
"Nick has been a very active member of the Shropshire Shufflers for years, but one of his last runs was in December 2024 with Kevin Sinfield as part of the Extra Mile, Kevin’s 7 Ultra Marathons in 7 days.
"As Nick’s mobility declined, he was still determined to ‘bang the drum’ and a small group plotted a Gala Dinner in April this year. This included amazing auction lots and both live and online bidding.
"The event was a huge success and culminated in everyone giving Nick a standing ovation. Nobody present will ever forget it."
Meole Brace councillor Bernie Bentick, another friend of Nick’s who supported him in his fundraising, said: “Words can hardly describe the courage and determination of Nick, a kind, gentle and generous giant, who bravely battled the cruel illness motor neurone disease for two years.
“During that time he managed some incredible achievements, including completion of the Three Peaks challenge and climbing the O2 Arena, where he met rugby legend Jonny Wilkinson.
“My thoughts and prayers are with Nick’s wife Lyn, father-in-law John and all his family and friends. We will always remember him fondly and continue to raise funds for the MNDA charity.”
A spokesperson for Shrewsbury parkrun said on social media: “It is with great sadness that we share the news that our dear friend and fellow parkrunner, Nick Deane, passed away on Friday after living with MND.
“Nick was a much-loved member of the Shrewsbury parkrun community. He was a run director and core team member, and over the years he volunteered on more than 90 occasions, taking on almost every role imaginable. Nick could always be relied upon to step in wherever needed.
“His presence was always a calming and welcoming one. Whether briefing first-timers, guiding the funnel, or cheering from the sidelines, he made everyone feel part of the family. His kindness, generosity, and quiet humour touched so many of us.
“In more recent years, following his diagnosis, Nick showed incredible courage and determination by dedicating himself to fundraising. Even as his own challenges grew, he continued to think of others, raising awareness and vital funds to support the fight against this devastating disease.
“Nick’s contribution to parkrun was also reflected in his own running journey. He completed 188 parkruns at Shrewsbury and 220 overall.
“This coming Saturday, we will hold a minute’s applause before the start to celebrate Nick’s life. We warmly invite runners and volunteers to wear Shropshire Shufflers kit or MND colours in his honour.
“Later this month, the Shropshire Shufflers will be holding a raffle to continue raising funds for MND and to help surpass Nick’s incredible fundraising target of £100,000. If you have any suitable items to donate, please bring them to the finish area this coming Saturday for Bob and Deb to collect.
“On Saturday, Graham Berry will also be raising funds for MND as he marks his 222nd parkrun. To celebrate, he’ll be running in his MND kit and an orange tutu, complete with a scannable QR code and collection buckets for donations for anyone who would like to contribute.
“We are deeply grateful for everything Nick gave to our community, both on and off the course. His legacy will live on in the countless runners, walkers, and volunteers he supported, and in the impact of his fundraising efforts.
“Our thoughts are with Nick’s wife Lyn, family and friends at this difficult time. He will be greatly missed, but never forgotten.”
